News

Enmeshed in Darlene Bergen's tissues were so many antibodies that it took a staggering 18 years to find a kidney for transplant.

Her story is similar to that of Lenka Cerny, who has been trying for a decade to obtain a suitable kidney, with one main difference: Ms. Cerny is queuing for an organ that may never come.

"My last appointment with my doctor, I broke down in tears and said, 'How long do I have to live?' " Ms. Cerny, 25, said in a telephone interview from Grand Prairie, Alta. "The chances of me getting a transplant are slim to none."

These women represent some of the most disadvantaged patients in Canada's kidney-transplant queue -- a group doctors label "highly sensitized" patients. Their bodies carry large numbers of tissue antibodies that most other patients do not. Not only do these antibodies make it difficult to find a suitable organ, but they also make their bodies much more prone to reject one.

The antibodies attack certain human leukocyte antigens, proteins that sit on the surface of white blood cells and body tissues. The antibodies often develop through pregnancy, a blood transfusion or a previous transplant. On their own, they pose no problem; in fact, most people aren't even aware they have them until they undergo testing before being put on a transplant waiting list.

In Europe, highly sensitized patients are given top priority for kidney transplants. In the United States, they get special preference in the organ queue. But in Canada, most of these patients languish on waiting lists.

Although highly sensitized patients are considered a priority in their own region, they don't have access to kidneys from across Canada, which would allow them to draw from a much larger pool of organs. This means that people like Ms. Bergen, from Winkler, Man., and Ms. Cerny are limited to a tiny number of donor kidneys.

There are no precise figures on the numbers of highly sensitized patients waiting for kidneys. But Margaret Keresteci, manager of clinical registries at the Canadian Institute for Health Information, was able to find some of the longest waits faced by patients who require second transplants, many of whom would be sensitized.

Ms. Keresteci found that one patient waited 30.2 years before obtaining a second kidney transplant in 2001, a situation she described as "quite startling."

In Canada, highly sensitized patients represent 17 per cent -- or fewer than 500 patients -- of those waiting for kidney transplants, said Peter Nickerson, co-chairman of a Canadian Council for Donation and Transplantation task force.

Yet these patients receive less than 1 per cent of all kidneys from deceased donors, said Dr. Nickerson, a transplant nephrologist at Winnipeg's Health Sciences Centre.

In an effort to remedy the problem, he is proposing a national computerized registry for highly sensitized patients so they can access all available kidneys across the country, not just those in their geographic area.

"If you look at the highly sensitized group, most are waiting for their first transplant and most are women," Dr. Nickerson said in a telephone interview from Winnipeg. "There's no question that these people . . . are waiting longer [than other patients] and are at larger risk of dying while waiting."

The registry would match highly sensitized patients with available kidneys across the country. Regions that donate an organ to a patient outside their area would get a "payback" kidney for one of their patients at a later date, he added.

A registry is required for these patients because they typically reject eight out of 10 kidneys. Some patients are so sensitized they will reject all but one out of 100 organs, Dr. Nickerson said. "These patients do not have equity of access."

Next month, an initial brief on the registry is to be presented to the deputy ministers of health. A final version, including how much it would cost, will be provided in December, Dr. Nickerson said.

Although the median waiting time for a kidney transplant, tracked from the moment the patient is put on the list, was 3.08 years in 2004, that figure does not tell the true story of the lengthy waits for highly sensitized patients.

Ms. Bergen's story, for example, began nearly two decades ago. High blood pressure during pregnancy damaged her kidneys. She also had polycystic kidney disease, characterized by the growth of fluid-filled cysts.

Her first kidney transplant, which failed in 1987, was followed by an 18-year wait for another organ. During that time, she went to hospital three times a week for dialysis. She was so sensitized that only seven out of 100 donor kidneys would have been suitable for transplant.

"When I look back, I have no idea how I did it," the 49-year-old said in a telephone interview from Winkler. "It was insane."

It wasn't until 2004, just a couple of months shy of her 18-year wait for a kidney, that a suitable match was found. Even then, Ms. Bergen required immunotherapy -- treatment to help her body accept the organ and prevent it from being rejected.

The reason why most highly sensitized patients are women is largely due to the impact of multiple pregnancies. During pregnancy, the fetus contains half of the father's human leukocyte antigens, many of which are foreign to the mother. That, in turn, causes some mothers to develop antibodies. Dr. Nickerson said about 30 per cent of women who have had three pregnancies will be very sensitized.

One such woman is Margo Charchuk, a 46-year-old health-services researcher in Edmonton, who developed antibodies at some point during her five pregnancies. She has three children.

She experienced kidney failure in 2002 due to an inherited disease called focal sclerosis, which affects the kidney's filtering units. When she learned she required a transplant, Ms. Charchuk couldn't believe she was able to tap into only a small pool of organs in her geographic area.

"I was told very frankly, right at the beginning, that my chances of getting a kidney were pretty much nil," she said in a telephone interview from Edmonton. "I was told by two nephrologists [that] there was no hope. My situation was very serious."

She had six offers from people willing to be living kidney donors, and it was her brother who proved an identical match. Last year, she underwent the transplant.

"The impact of getting a transplant is huge," Ms. Charchuk said. "It gets people back to work and they're productive."

Indeed, the cost of not doing a transplant is significant: Dialysis costs an estimated $50,000 annually, not including medical fees, according to Ed Cole, head of nephrology and renal transplantation at Toronto General Hospital.

While dialysis keeps people alive, and many feel well on it, in general, patients experience a higher rate of heart and blood-vessel disease, said Dr. Cole, who is working as co-chairman with Dr. Nickerson on the national registry.

"Long-term survival is better with a transplant than with dialysis," Dr. Cole said.

Though dialysis is keeping her alive, Ms. Cerny, a bookkeeper at an auto-body shop in Grand Prairie, is concerned about its effects.

Five to six nights a week, she plugs herself into a machine at home that does the job her kidneys cannot: removing waste products from her blood and excess fluid in the form of urine.

Ms. Cerny began her wait a decade ago, when her kidneys failed because of a rare hereditary disease called Wegener's granulomatosis, which inflames blood vessels and damages organs. She developed antibodies after two failed transplants when she was 17 and 18.

Her transplant nephrologist, Patricia Campbell, acknowledges the chances of finding a suitable organ for her are "very low," due to the small pool of donors.

"We don't know if that donor will come up next week, 10, 20 years from now or never," Dr. Campbell said in a telephone interview from Edmonton.

It's a constant worry for the young woman, who wishes not only for an organ, but the simple pleasures in life -- like picking up at a moment's notice and going on holiday.

"[My parents] want to say that I'm going to be okay, but how can they?" Ms. Cerny said. "They've seen this from the beginning. Their hope, more than anything, is that they don't have to bury me."

As of Dec. 31, 2004, about 2,872 Canadians were on waiting lists

for kidney transplants; that same year 55 died while in the queue, according to Canadian Institute

for Health Information figures.